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NCT04855734 · ClinicalTrials.gov registry record · NA
FACE for Children With Rare Diseases
A NA study, sponsored by Children's National Research Institute.
- Completed
- Registry status
- NA
- Development phase
- 42
- Enrollment target
NCT04855734: Completed NA study, sponsored by Children's National Research Institute.
NCT04855734 is a NA study that has completed, run by Children's National Research Institute. The registered enrollment target is 42 participants, below the 1,404-participant average among 58,714 other NA trials with a reported enrollment target (97% lower). According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT04855734, a NA study, has completed, sponsored by Children's National Research Institute.
- COMPLETED
- Registry status
- NA
- Development phase
- 42 participants
- Enrollment target
Study Summary
Children with ultra-rare or complex rare diseases are routinely excluded from research studies because of their conditions, creating a health disparity. However, new statistical techniques make it possible to study small samples of heterogeneous populations. We propose to study the palliative care needs of family caregivers of children with ultra-rare diseases and to pilot test a palliative care needs assessment and advance care planning intervention to facilitate discussions about the future medical care choices families are likely to be asked to make for their child.
Primary Outcome
The Beck Anxiety Inventory (BAI) is a 21-item measure of anxiety rated on a 4-point Likert scale of symptoms over the past week. The BAI has demonstrated reliability and validity to assess anxiety in individuals aged 17-80 years. The BAI has good reliability and validity for family caregivers of seriously ill children. It is a measure of Quality of life: emotional health. Higher scores mean more anxiety symptoms. Total score was used in analysis. Scores range from 0-63.
Interventions
- BEHAVIORAL FAmily CEntered (FACE) pACP Intervention
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 42 participants |
| Start Date | 2021-07-06 |
| Est. Completion | 2024-06-01 |
| Phase | NA |
What the finished NCT04855734 record still lists
NCT04855734 is an interventional study that assigns participants to a tested intervention. The registry caps enrollment at 42 participants, a relatively small participant target, below the 1,404-participant average among 58,714 other NA trials with a reported enrollment target (97% lower).
The record links to 0 conditions, and to 1 intervention - of which FAmily CEntered (FACE) pACP Intervention is the first listed.
NCT04855734 does not publish any study locations in the registry export this page uses.
Frequently Asked Questions
What is clinical trial NCT04855734 about?
NCT04855734 is a clinical study titled "FACE for Children With Rare Diseases". Children with ultra-rare or complex rare diseases are routinely excluded from research studies because of their conditions, creating a health disparity. However, new statistical techniques make it possible to study small samples of heterogeneous populations. We propose to study the palliative care n...
What is the current status of trial NCT04855734?
This trial is currently completed. It is a NA study. The enrollment target is 42 participants. The study started on 2021-07-06. Estimated completion is 2024-06-01.
What interventions are being tested in trial NCT04855734?
The interventions under investigation include: FAmily CEntered (FACE) pACP Intervention (BEHAVIORAL).
Who is sponsoring clinical trial NCT04855734?
This trial is sponsored by Children's National Research Institute, which has 92 total clinical trials registered on ClinicalTrials.gov.
Learn More About Clinical Trials
How this trial's enrollment target compares
Where NCT04855734's enrollment target sits among peer trials
42 1436th of 2000 higher than 555 of 2,000 other NA trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other NA trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
Source ClinicalTrials.gov registry export · 2026-08-08
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